TOPIC:

Alright ITPers,
I know you are out there, probably not awake at this time (hopefully for you, you are not), but I am! Maybe my Aussies or people far, far away are up and at 'em. Here in Charleston, SC, it isn't even 6 a.m!
My insomnia could be due to several reasons. So, instead of laying in bed and listening to my husband sleep like a baby, I decided to get up and bitch to all my friends on the PDSA board...oh, what would I do without you guys? I am so happy I have this place to turn to.

For those of you that know me, you know I'm a little crazy as it is, so please disregard any foul language or just overall unpleasantness. I'm blaming it on the drugs....yeah, the drugs. I do apologize ahead of time.

~Reasons as to my insomnia....and adorably (that is a joke) unpleasant attitude~

a.) I am on the "dex pulse" and have been up since 4:30 rolling around. I might as well get my ass up and do something, even it involves bitching about the "having to take meds that make me get up at 4:30" part. Being a kindergarten teacher (*gasp...yes, I am a kindergarten teacher with a filthy mouth) with 2 weeks left of summer vacation, I can take this "early to rise" thing as a blessing for getting me prepared for school wake up calls or I can bitch about not being able to sleep in for my last 2 weeks of summer. I'll take option 2 right now. I enjoy sleeping...but, alas, gigantic horse doses of steroids will not allow for that, now will it?

b.) I'm a nervous wreck because I go in this morning at 8:45 to get my blood drawn. Depending on the results will determine whether or not I begin my second "go round" with Rituxan. I had my first "go round" five years ago at the age of 22 and had a long, sustained 5 year remission with normal counts in the 200-300s. I am so thankful for that, so it gives me hope that it will work this time around too...if I have to go there today.

Am I so selfish to not want to go there again? I keep turning the idea around and around in my head. I DON'T WANT TO DO IT AGAIN! I want this to be over! I hate this! I hate it!

I laughed earlier (probably around 5:00 a.m.) laughing at one of the posts on another thread. Someone said (I can't remember who) that everyone in their dr. office knows them...even the nurses. Let's just say if the nurses and staff at my hematologist's office don't know me, they do now considering I had a break down this past Tuesday in which my hematologist had to come out and hug me, baby me, and tell me I was not dying. Yes, I know you guys are shaking your head like, *tsk, *tsk..."Oh Natalie." But, you guys know how I am. So, in my steroid stupor, I have come to several realizations that I just felt like talking about. I'm not necessarily looking for responses (although I do love a good response), but I just feel like running my dexamethasone overloaded mouth right now.

Is it so bad for me to be angry about having this "thing?" You see guys, I consider myself generally a very happy, satisfied, optimistic person with a great attitude. But, just the thought of this makes that all crash down. I wouldn't consider myself a newbie at this at all. It's been 6 years, so I know what I'm dealing with, but why does it all seem so new all over again?

Let me explain. On Tuesday when I went to the dr. and she put me on dex, I got upset. I haven't had to treat in FIVE YEARS. There was (and sadly still is) a little, tiny, minute part of me that thought I was acute...I thought...it was a dark part of my life, it is over now. WRONG-Y DONG-Y (kindergarten teacher coming of me there). And as I stood there in her arms crying, I look over her shoulder and see patients suffering from God only knows what sitting in THE WAITING ROOM receiving chemo treatments because the infusion rooms were too full. How dare I? How dare I cry over little ITP when these poor people are surely suffering from something so much worse? How dare I? So, as I drive home, I cry from guilt. "Natalie, you are ok. Look at all those people suffering from cancer. Your life is beautiful." This is a piece of comfort that I do have and am so thankful for. But, still. I suffer, too. I'm sad, too and I feel like I'm slowly letting this "thing" take me over again.

I read another post someone wrote about the dr. always commenting on how healthy they are. I laughed at this too. Being 27, I get that alot. I have yet to see anyone around my age in the waiting room. It's like, "Wow...but you don't LOOK like anything is wrong with you!" And I'm thinking..."Oh but wait...*giggle, giggle* You didn't witness the 3.5 hour nosebleed I had this morning." (Thankfully, that hasn't happened to me in a very long time).

I am always needlessly looking for people around my age who have ITP. I surely can't be the only person in Charleston, SC with it! There has to be someone else! I find myself with my ears wide open in the craziest of places just waiting for someone to say, "Oh, I have this thing called ITP." I would jump on the conversation faster than lightning. But alas...even stalking the aisles in target, listening in the fruit section of the grocery store, or sitting in my very own doctor's office has not brought me much luck...no luck, actually. Which brings me to my next rant:

I HATE and I mean HATE trying to explain this disease to my un ITP friends. I know that sounds so mean and callous, because I should enjoy educating people about it (which I do...to an extent), but I usually get one of 2 responses:

1.) "Oh My God. Are you ok? Is there anything I can do? That sounds terrible! So, there is something wrong with your blood. You had to have chemo? You might have to have it again. What if it doesn't work?"
To which I want to say-- "I'm fine. Doesn't my hair look great today? It is terrible, but I am doing ok. No, there isn't anything wrong with my blood...it's my antibodies and my immune system, you see ITP is an autoimmune...blah blah blah (cue the Charlie Brown teacher voice)...Yes I had to have a drug called Rituxan (as I'm thinking...I'm not even getting into the rat protein component of that with you, honey, seeing as this is ALL WAY TOO OVER YOUR HEAD ALREADY.) Yes, I may have to do it again. And I will, if I have to."

Or, response number 2:

2.) "Oh wow. That's crazy. But you feel ok, right?" To which I say--"Yeah it sucks. I feel fine." But I'm thinking to myself--"You have no idea how crazy it can be! Let me poke you with needles every week and try to figure out why your antibodies have decided to attack your own body because they are stupid!"

Phew. Wow. Ok. I feel a little better.

Guys, I really am sorry to be the "debbie-downer" this morning. I truly do consider everyone on this discussion board a sincere friend. I'm sorry to be the one to have the bad attitude today. I know some of you are reading this, rolling your eyes thinking I'm annoying. And that's ok. I am annoying...ask my husband. He has been referring to my rants and bouts of spasticness as "roid rage." Hahahaha...it is kind of funny. Just yesterday I did all the laundry, 2 loads of dishes, vacuumed, dusted, made tons for my classroom, cooked a yummy dinner, and the list goes on. The headline could read, "Positive outcome from ITP--Woman becomes domesticated." Trust me...usually, if I get one thing done on that list, I deserve a medal. Usually, it's like all my muscles turn to mush during summer vacation and my brain goes on hiatus. My husband jokingly said, "Man, we need to get you some of that dex stuff more often." To which I smile thinking, "Oh you idiot. If I could have a free pass to knock you out...." Just kidding (sort of). He knows not what he says when talking to a woman on steroids, obviously.

Phew. Well, talking on here, even if it is just to a computer screen has made me feel a little bit better. For some reason, when I get on here, it is cathartic knowing that I am talking to other people who "get me." Because, no one else seems to. I am sorry for talking so much and for being "that person" on the discussion board. But, I had to let it out. *Ahhhhhhhhhhhh* Feeling better

Hopefully, my attitude will improve, at least by August 21st, when my new batch of sweet kindergarteners come to me. I love my job immensely and it brings me so much joy, so I think it will at least take my mind off of things. I'm laughing right now thinking about you guys thinking..."There is no way in hell I would let that woman teach my kid." HAHAHAHAHAHAHA! Even with ITP I have managed to be nominated as Teacher of the Year twice...so boom yow.

Good morning guys, Love to you all!
Natalie

P.s.: I will update as soon as I know anything from my doctor today.

Hey Natalie... You do have some Aussie friends awake at your ungodly hour, it's actually around 10.00pm here.

Don't feel to bad about having a rant, you are entitled to rant, it's good to see you still have your humour and you can still see that side of all this. Nat you have done this before and you can do it again... You will be fine

Hey Natalie its me again, I wrote this big long post and I was on my ipad..it doesn't seem to like long posts.
Dont be to hard on yourself, life on steroids is not easy and although sometimes you feel like bashing the husband..probably not a good idea, he hasn't been on them so he really doesn't understand the effects they have..that endless thing of not sleeping, hyperactive, foggy feeling..it sucks.
I would be very happy for you to teach my kids as you through all this have got to know that things are not always as they seem, you have an understanding of life that most people will never have.
Don't knock yourself around because this condition is not cancer..and I am not making light of serious illness but Itp and all that goes with it, endless doctors and test and all that crap is still a pain in the bum.
I too have tried to explain ITP to people but I give that up..they either panic and think that you are going to drop off the perch or look at you as if you are crazy, that old invisible illness thing...can't see it, it doesn't exsist.

Anyway good luck at the docs and keep smiling, all will be ok

Natalie

You sound a lot like how I was feeling a few months ago when on a high dose of prednisone. I think my husband took the brunt of it and I did some venting on this site.

Enjoy your clean house cuz when you come off the steroid you won't want to do much cleaning! Oh and don't tell Jeffrey about all the cleaning you are doing as he will want you to come clean his house .

I work in a school too and understand your feelings about summer. Hope your counts are good now and you can enjoy your last couple weeks.

Natalie:

I'm wondering why your Hemo is going this route. Dex can get counts up quick, but most people also then drop pretty fast when the drug is stopped. Every so often, counts stay up, but Dex is a sort of rescue treatment for low counts and only ends up putting off the inevitability of another treatment for a week or so. Your counts were actually good prior to starting Dex, so it seems a bit aggressive and unnecessary to me. You might end up worse off than you were when you started. I'm hoping that is not the case for you. Since my remission from Rituxan, I dropped into the 60's twice, did not treat, and rebounded on my own both times. Sometimes it's worth it to watch and wait.

That drug can make you crazy and most people totally crash physically when it is stopped. Be prepared for that. It can be pretty hard for some people. You might be just fine....hope so!

The only positive thing I can give you is that since long remissions are possible with ITP, you are better off than most people with autoimmune disorders. Yes, it stinks to have to have one, but since you do, it's not the worst one you could have. You will get through this, again.

You still have your sense of humor, so keep that and hang onto it!

Thanks you guys! I always love hearing what y'all have to say! You all truly do make me feel better! I am back already after my appointment....so that is good news! haha! Turns out the dex rose my platelets up to 210 in just 3 days. The rescue treatment worked! My hema is starting the taper now and we are playing it by ear. Basically, the reason they are approaching it aggressively is due to the fact that it took me SO LONG to get above 30 the first time. They don't want to risk it. I agree. I am so totally happy with my count today. I spoke to her about possibly staying on some sort of steroid (not ideal, but I have to do what I gotta do) in order to get through these next 2.5 weeks before the little ones return! I can't miss curriculum training, so if I can just put off treating with Rituxan for a while, I am good. I think I am ultimately putting off the inevitable, but hey, with counts in the 200s, I am not fretting about it too much! And with the steroids, I can deal with them. I've never tapered off of dex before...only pred, so it should be interesting! But, this is why I love coming on here and talking with you guys! It always gives me a heads up and makes feel like better! They have cut me back from 40 mg a day of dex to 20. I go back in 4 days for a check in. I am fully expecting a drop, but at least we can go from there! As for now, I plan on taking advantage of this energy and of TAX FREE WEEKEND! What, What! As always, I will keep you all updated!!!
Natalie

Natalie,

Hopefully this will make you laugh for a minute! I met my class today ( I have 3 kiddos since I teach self contained special Ed). Well one said he is working on designing and building dorms so that the teachers can live at school.

Valerie,


Most of the kids I work with think I do live at school.
You already started school? Or was this just a get acquainted day?

We start Monday...crazy!

Hi ya Natalie,
You just put a huge smile on my dial - thank you! I can relate to all you wrote (am currently tapering off pred) & wish I could give you a BIG hug. What you wrote was actually pretty funny & entertaining despite being true - I know you are going to be a great support for others going through some tough times.

Things that help me are:
- Knowing that there are many other autoimmune disorders & that ITP is minor compared to one such
as MS.
- My sister & several friends are currently on chemo treatment for cancer, with an unknown future.
- Taking control of looking after myself with diet, exercise & commitments. (Learning to say 'no'
was very hard for me)
- A caring, supportive family & friends.
- The PDSA

By the way, someone suggested I take my pred. at night, enabling a decent sleep before it kicks in & it has helped. I am NOT a morning person normally, but have been up early & rearing to go, then gradually settling down late in the day. Just like nature intended!
Hang in there,
mj

Guys,
You are always so kind to me and make me feel so much better! I think the shock of it all has slowly begun to wear off. Like I said in my previous posts, I was hoping that ITP was gone for good...but it isn't and I am slowly accepting that and learning that I'll be fine with it. Same person...same me and I can still have that same outlook, even if it does involve weekly dr. visits and treatments. Your support means the world to me! Meredith, thanks for the BIG HUG! That was sweet of you! The husband has felt a little bit of wrath from the dex but I am trying to be a nice girl! haha! Sandi, as always, thanks for your insight! You know I love hearing from you! Dru and VDeutsh, I can't believe our summer is over! I like knowing you two are in the trenches with me!!!! I hope you have an amazing year with your little ones! Keep me posted on how that dorm gets built!!! HAHAHAHA! Too funny! As always, I keep you posted on my ITP progress. My counts were at 210 on Friday thanks to the dex. I go back on Tuesday for a recheck! I'll keep you updated! Again, thanks so much!
~Natalie

Good luck with the counts, Natalie! I hope they are still up! Are you still on Dex?

Natalie, you are just too funny! (but also in a serious kinda way)

Even though there is a big age gap - you sounded just like my daughter. She is only 11, but describes the pred dread and roid rage the same.

I hope your counts stay high.

Jac

You guys are funny! I'm glad I got a laugh! I am on 50mg dex now! I feel ok and am getting used to it! I go back tomorrow for another count and go from there! I'm in a happy spot now and feel as though my counts are holding! We shall see! If not, you guys always make me feel better!

I'm glad you are feeling better Natalie. It's always great to be able to vent every now and then.
Jac

You got that right! Sometimes you just need to rant! When you're on steroids you REALLY need to! haha! As always, I'll keep you guys posted Thanks for sticking by me!

Hey guys! Great news! My hematologist was thrilled to let me know that my counts were 357 (yes....357 today)!!! That is a record for me! I am weaning off the dexamethasone and have orders to take 10 mg of it until Friday for my next appointment where they will check again. My hema says its a great sign that the have rebounded back and she is hoping and thinking that since they have responded so well that they may settle in a safe range and I may not have to immediately think about treating again...which is music to my ears! Of course if I have to, I will cross that bridge when I get there. But, for today I am so happy! For now, I am on cloud nine and taking it as a blessing that I have responded so well! She mentioned that any little virus could have depleted me and that is probably the cause of my drop. I had a severe case of food poisoning right before the "plummet" from 152-103 and I am thinking that had something to do with it! The dex is kind of getting old and I can definitely feel the aches and pains of it, but I am just so thankful to God that it has worked that I can overlook all that mumbo jumbo for now! As always, I will keep you posted! Thank you for keeping me in your prayers!
~Natalie

that is great news! Hope you can enjoy your last days of summer break now.

Natalie, that is just sensational news!

Guess what guys....I got up this morning and made gluten free waffles! HAHAHA! Maybe it's the high of knowing my platelets were so high, maybe it's my unsatiable appetite, or maybe it's this early to rise on steroids thing, but they were GOOD! I have my follow up appt. tomorrow! I'll keep y'all posted on platelet numbers and any other good meals I cook! My husband could get use to this.....

Natalie,

Yay! I'm glad you are doing well!

Hey guys! I had my weekly CBC and the news is good! My count was 277 today! Down a bit from Tuesday, but with the slow taper, my doctor said that is typical. She said that it is great that my counts still continue to stay so high on such a small dose of steroids. I am on 10mg, so they are holding steady. She has me continuing the slow taper for a week and we will recheck next Friday. I know I will be a nervous wreck next Friday because by that time, I will basically be almost all the way off of the steroids. As always with ITP, she said we just never know for sure why they dropped so low so suddenly or why they take off the way they do when I'm on steroids. She is happy that I am responding, so if she is happy, I am happy! I have a few questions for you guys in regards to the steroids:

I have been on them before but do not remember them making me feel so damn foggy. I feel like my brain is in a constant fog...it gets especially bad at night (probably b/c I am coming down off of the high). Has anyone else experienced this? I mean, it literally feels like I am tipsy or drunk by 8:00 at night and I am ready to hit the sack!

They have interrupted my sleep patterns for sure. They didn't do that last time. I am dead tired by 8:00, asleep by 10 and then wide awake at 4:00 a.m.! I usually toss and turn and eventually go back to sleep around 6 or so, but it is a nuisance. Then, I wake up at 8:00 and am wired and ready to go, go, go!

My appetite is insatiable. I want to eat everything. It seems as though as soon as I finish a meal, I am planning my next one! My doctor says all of this is very, very typical! It is a bummer though b/c I was really trying to get healthy again!

I've never peed this much in my life! They can feel the water retention all over my body and my face feels so round...like a tomato!

The worse is that I am SO HOT all the time! My hema even commented on how pink my skin was with thrush because I can't cool off. I don't sleep with any covers (which is totally not like me) and I have the fans and air on blast. I am freezing my husband to death!

Anyways, just wanted to update you guys and see if you had any input! As always, I'll keep you updated with my progress! Let's hope the kindergarteners next week don't feel the roid rage! haha!

Natalie

Natalie!

Poor kid! Just look at it this way... Practice for the "change"! LOL The rest of the items are classic prednisone! It made me hungry too, constantly. As for the bathroom trips, just wait until your my age! You are just glad you can go! Roflmao! Brain fog? I get that when I e-mail with Julia (Winnifred)! I know I will pay for that one!

You are on the right track, you have good counts, and you are coping and happy! My friend, that is all it takes! We all have your back!

Jeffrey

PS Spend some time in Indiana, you will see what brain fog really is!

Natalie:

You're on 10 mg's of Dex? Dex is much more potent than Prednisone and can make the side effects and withdrawal a lot worse than what you'd experience with Prednisone. The only good thing is that it's over faster because people are not on them for very long. It can make you flushed and hot, and can definitely cause brain fog.

I've never seen anyone on Dex like that. The standard protocol is 40 mg's for 4 days, then stop.

10 mg of dex is the equivalent of 66 mg of pred. So not a low dose at all. So don't worry about feeling weird when you stop it. It's normal with such a fast taper.

Thank so much guys. Yes. I was wondering. See, I wasn't sure how it all pans out because I've never been on it before. I am definitely questioning the technique in my mind b/c out of all my research that I've done, I've never seen someone on it for a taper like she has me on it. I am almost certain the counts will crash as it continues to be tapered, but there isn't much else I can do at this point to get me through the start of school. I am on 6mg a day for four days and then is tapering me to 4 mgs a day for four days. So far, the platelets have been high, but there have been drops between tapers. What y'all have said has made perfect sense. I was equivalating it to prednisone, but obviously, that is not the case. It is more potent! And, damn, I sure can feel the difference. When I was on prednisone in the past, I never felt like this. This is by far the strangest I have ever felt on a medicine. Constant brain fog, intense sweating, insatiable appetite, thirst for days, and the reddest, roundest face you ever saw! I am hating the side effects but glad that my platelets are strong for now so that I can get back into my school routine. I go back this Friday after being tapered down to 4mg a day. Part of me is preparing myself for a low number, then the other half is encouraging myself to think positive. I guess I just won't know until the drug is stopped how my counts will respond to nothing. All I know, as of right now, is that I want to be off of it! That is for certain! Thanks for responding! You clarified a lot for me!

Your doctor is experimenting which isn't always a bad thing. If it works that's great. If it doesn't both she and you will have learnt. She'll have learnt it doesn't work and you'll know whether you want to try dex again. I took it once for the usual 4 days but at half dose, so 20mg. It made me feel drunk and I couldn't walk straight. I felt like that for over a week after stopping it and I was terrified that it would be permanent. I crashed down to a count of 2 a week after stopping it. They do say that you may have to do it several times to get a chance of the count holding. I refused to do it again but you may think it's worth another go.

There's a steroid converter here.. www.globalrph.com/steroid.cgi

Thank you Ann! That is very helpful! Yes! I am hoping it will hold them up for a little while...at least until I can get my feet under me and go from there! It is definitely not like anything I have ever had before, which is why I am so nervous about it. I am definitely going to talk to her about the side effects at my next appointment and weight these pros and cons! My counts were not even low when she put me on them, but they were showing a downward trend, so, that is why she went ahead with it. I know she is human, too, but as far as my ITP goes, she has been right on the money. I am lucky that I respond so well to everything, but, like you said, a crash is to be expected. The lowest my platelets have ever been was when I was diagnosed with a count of 17 five years ago and was hospitalized and then introduced to this disorder. After doing the regimens of prednisone and Rituxan, I have had normal counts for 5 years and they recently dipped down to 100 because of an infection and stress. If my counts hold in the 80-100 range with no treatment, I am good ot go and I don't care anymore! I just want this drug OVER with! As always, I will keep you posted! Thanks for always looking out for me and thanks for the converter!

Hang in there Natalie!

Jeffrey

Hey guys!
So, as always, thanks for waking up and reading my rants! I am up and at em' this morning. I head back for a week full of teacher workdays and professional developments. I must admit, it has been a rough go these last few weeks with the dexamethasone taper. When I meet with my hematologist on Friday I am seriously telling her to get me off of this stuff. Guys, I just don't know. I think these drugs are making me crazy. I feel anxious, euphoric, drunk, and literally out of my mind when I'm on them. I'm on 4mg and do NOT recall prednisone making me feel like this. I just want to be off of them. It is very strange because I almost feel a dependency forming. Like, when I am not on the 4mg, I am loopy and crazy and then once I take the drug, I settle down a bit, but it all rears up and gets crazy again once it't been in my body for an extended amount of time. I just can't function like this. It is horrible. I would rather have stable counts that aren't considered "normal" than be on this drug! It makes me feel terrible. And this morning I woke up with terrible leg pains? What is this? I am starting to go nuts and convince myself that this drug is making me crazy and causing all kinds of terrible things within my body...blood clots? hysteria? overall craziness? I know I sound like I'm trying to be funny, but I'm actually being very serious. I just dont' know how much of this I can take. What should I do? Do you even think quitting it cold turkey is an option or is that even worse? At this point, I don't care about my platelet count (within reason, of course). I just want to be back to my normal self. Please help me! Any advice? What would you do? What have you experienced?