Just diagnosed

This is my story so far. Started 6/30/2012 I wrote this a few days ago in the hospital:



I type this while sitting in the hospital after going to the ED yesterday. For the last few weeks I had excessive bruising, petechiae, and a very heavy menstrual cycle. I had made an appointment to see my doctor but hadn't been yet. Yesterday while driving to work suddenly got very light headed and had a heavy pressure behind my left eye. I got quite nervous considering the other symptoms I had been suffering so returned home and had my husband take me to the hospital.

While en route I suffered severe numbness and tingling on the left side of my face and down my arm to my fingertips. I was scared I was having a stroke or something. While at the ED they took blood and my platelets were a 3. They also did a CT scan to rule out brain bleed. Thankfully that was clear. I was transported by ambulance to another facility over an hour a way who was more equipped to treat me.

I was given a dose of prednisone before transportation and my next blood levels had platelets at 4. After extensive intake! lots of questions about medical history etc... And ruling out that a blood smear showed no sign of unusual cells, they began me on Intevenous immunoglobulin. Next blood work I was up to 15. That was at 5 am this morning. They have now diagnosed me with ITP. Since there is no other apparent underlying cause.

I have always been relatively healthy except for a short instance 15 years ago with another unexplained auto immune disorder. I had swelling, redness and heat from my joints, but even after extensive tests there was no cause.

I was released from the hospital Monday after having 3 treatments of the ivig, my platelets were at 80. I am on 65mg of prednisone daily for the next week when they will do another cbc and see how I'm doing at that point hopefully will taper off. So now its just a waiting game to see how I do. I am exhausted all day and awake all night probably the prednisone. Shaky and lightheaded. I am due back to work tomorrow not quite sure how I feel about that.

Sorry if this seems convoluted but piecing my story together from a few different places. I am really happy to have found this site. I wish I had found it white in the hospital at that time all I could find were people that had underlying causes for their ITP and I was feeling a bit like a freak.

Hi Kara - I'm happy you found us.

ITP is a scary disorder at first, but in time, most people adjust. You should know that a count over 30 is considered to be safe, so if you are over that, you should be okay.

A good bit of the time, people are not hospitalized with low counts, but because of the symptoms you had, I can see why they did. Those symptoms are not common with low counts unless there is bleeding somewhere. Since that was ruled out, I'd wonder what caused it.

Prednisone can cause a lot of odd and unpleasant side effects as you are finding out. You get through it.

As for work, most of us continued to work while on treatments. It can be hard at times... been there! You just have to keep reminding yourself to breathe slowly and know that it's "just the drug". Take one day at a time.

Welcome KaraP- Glad you found the site! You've come to the right place- theres a lot of information here about ITP. It has really helped me learn and make better decisions.

Sounds like your treatment is following a pretty normal course. I was put on 80mg pred at the hospital and no Ivig. They sent me home after a couple hours. Everyone seems to have a bit different experience, but prednisone is usually the first treatment. Good that it is working for you! Some people don't respond, then it gets interesting.

Did they give you any explanation about the tingling and numbness on your left side? Just curious. Good luck- hope things go well!

Welcome KaraP. You have found a very helpful site, with people that understand what you are going through. When diagnosed, I was relived that they gave me a diagnosis, but then after researching ITP, I was quite scared, as ITP means they do not know what causes the low Platelets. As time goes on you will get used to the "rollercoaster" ride. Many ups and downs with Platelet counts, even with treatments counts can bounce around alot!! Prednisone is not a long term treatment for ITP. It will raise counts as long as you are on a higher dose but counts generally drop as Prednisone is tapered. I was on 80mg for a few days at first then as I tapered, the counts tapered with it. It was decided that Prednisone is not going to work. Had two Platelet transfussions which were destroyed rather quickly. Rituxin was the next treatment. First round lasted 16 months and the second round is going on 3 years!! I was never Hospitalized even at 2k, but that all depends on the Dr. Please do not let this stress you out. You will be fine. Just roll with the punches. I know, easier said than done but we have been there and are here for you!! Personally I feel a virus combined with stress triggered my ITP.

Thanks for the responses! First off they haven't given me any reason for the symptoms I was feeling. Kind of worried about that. They have not completely gone away even now. Still tingly on my left side nothing like the numbness I felt on the way to the Ed but still present. I feel awful and this is concerning because I have no idea if this is the drugs or if there is something else going on. I feel weak tired and over all just yucky. Slight headache still on the left side. I am taking 65 mg of prednisone at about 6 am. The last two nights I noticed that I start feeling better around 6pm flushed cheeks from the pred and a little more alert. Am I processing the prednisone so slowly? I go back Monday hopefully I can find out more and do something to feel more normal. Any advice would be appreciated.

Kara:

It's hard to say what is going on. When my counts were low, I did feel very tired, weak and dizzy. I kept feeling like I would pass out, but I wasn't sure if it was just the stress of knowing my counts were down or what. It was at the beginning of my diagnosis and I don't remember if I felt that way or not after having ITP for a while. You had some weird things before you knew, so it's hard to say.

Prednisone will make you feel zoned out, shaky...there are a lot of side effects.

Maybe you can suggest having an MRI?

Just got off the phone with the pharmacist. I am going to try the prednisone at night. She says what I am feeling is completely the opposite of most reactions to the drug. 12 hours after I take it I feel great wide awake ready to do whatever...all day long I am struggling to stay awake. So half dose tonight half in the morning then tomorrow full dose at night. I will let you know how it goes. Just need to get through working this weekend then back to doctors on Monday. As an aside whacked the heck out of my big toe this morning and just a hint of a bruise. Obviously my levels are still in the safe zone. Hopefully will not drop off with the taper.

You can try taking it at night, but just so you know, it's best to take it in the morning because that is when the adrenals are the most active in producing cortisol. I didn't follow that either though and did split my dose during the day. Taking it all at once made me too spacey and shaky at work. I couldn't speak coherent sentences.


"The maximal activity of the adrenal cortex is between 2 am and 8 am, and it is minimal between 4 pm and midnight. Exogenous corticosteroids suppress adrenocorticoid activity the least when given at the time of maximal activity (am) for single dose administration. Therefore, it is recommended that Prednisone be administered in the morning prior to 9 am and when large doses are given, administration of antacids between meals to help prevent peptic ulcers. Multiple dose therapy should be evenly distributed in evenly spaced intervals throughout the day."

www.drugs.com/pro/prednisone.html

I had my follow up yesterday. Platelets up to a whopping 588. Tapering down on the prednisone. 2 week follow up from here. I am optimistic but not getting my hopes up after all I've read on here seems like it could be very likely to see a significant drop again after the effects of the ivig wear off and of course the lowering doses of prednisone. Keeping my finger crossed.

I am continuing to take prednisone at night. I just can't stay awake after taking it. I appreciate your advise Sandi, but both doctor and pharmacist say it really doesn't matter the time of day, since you are flooding your body with what your adrenal gland would be producing you are not actually stimulating your adrenal glands to produce. Hence why they can forget how to work after taking pred for too long. All I know is this is the only way I can continue to function at work so gotta do what I've gotta do.

Take care everyone!

Kara - I'm happy to hear your numbers went so high - here's hoping you have a nice long upswing!

I also tried taking my pred at night, but I waited until about 2 or 3 am. This gave me the benefits you are talking about (I also had that 12 hour "swing" to wacky, so taking it at 2 am meant I was "super awake" at 2 pm), but didn't mess with my natural adrenal function as much. This was something that worked for me for a while, and you have to do what works best for you.

Unfortunately, doctors and pharmacists will often "poo-poo" the side effects of prednisone, and will make off-handed casual comments that the time you take your meds "doesn't matter" and whatnot. It's strange, because they're the "experts", but honestly, you will often find more thorough, researched, and quantitative advice from the people on this site.

I believe the goal with taking the pred between the natural hours the body makes its own cortisol (super early AM) is to suppress the adrenal function the least amount possible and keep your body functioning as close to the way it naturally would. And the reason you would do that is to make the taper (stopping steroids) less taxing on your body. hopefully your taper will be easy since you had such a fast bump in your numbers, and have only been on the prednisone for a short time.

I've found (over the last year) that many doctors don't really take things like how difficult the taper is on you emotionally and mentally into account - they often only focus on the physical. It's a rarity to find that dr that values you as a whole person and takes it all into consideration.

So that's my long-winded two cents! Definitely do what you need to do to make the prednisone work - 65 mg is a high dose and lord knows that's not fun no matter what time of day you take it. But if you can swing it, maybe try 2 am for your own health during the next month, as you taper down.

Know that we are here for you and we definitely understand how you feel. When I was on doses that high I thoughts was going to punch someone in the face about once an hour, and then the next hour I wanted to cry. And at work I would talk so fast (I'm a trainer, so people have to listen to me talk) that it came out as a garbled mish-mash of words.

Good luck - I hope your numbers stay high and your taper is swift!

Yeah, do not hold your breath with Prednisone. Genrally counts will drop as dose tapers.
We are hear for you.

I did have 3 treatment free years rom Prednisone once. My counts stayed up for a pretty long time. It does happen once in a while.

Update.... felt awful on Thursday swelling in my left leg that I noticed Wednesday night. Exhausted and just overall yucky. Figured it was just the prednisone, but I promised my husband I would call the doctor. Called during my lunch break wanted to see me to make sure I didn't have any blood clots. He seemed to think all was OK but had an ultrasound done to be on the safe side. Also told him that I was tingly on the left side again. That had been dissipating but was pretty noticeable by Thursday. While I was there he did another cbc, called in my script tapering me off down to 40 of the pred. He cancelled my appointment that was scheduled for Monday and said he would see me in a week so we could taper again. Said he would call with results of ultrasound if anything concerning appeared. I didn't hear from him so figured all OK. Out of curiosity I called Friday to see where my platelets were. Got a call back saying all was fine with ultrasound which I already figured but that my platelets were at 40. He was very surprised and suspects that the last count was not mine or there had been some sort of mistake with the labs. He said I never should have dropped from the 500's down so rapid if I had really been up there in the first place. So now I go back Monday as originally scheduled for another cbc and reevaluation. Pretty bummed since I am on vacation and really didn't want to spend my time driving an hour to appointments. Plus I really wanted to go to six flags with my kids but if I'm feeling this crappy won't be able to do it. I will keep you posted on what happens Monday. Hope everyone is doing well. Still not sleeping a few hours here and there.hence writing this at such an early hour.

Are you seeing anyone for the tingling feelings? Seems to me, but I know nothing about American medical ways, but seems to me that you should see someone different for that. Specialists the world over tend to ignore things that don't concern their specialty and sometimes they shouldn't be ignored.

It doesn't seem unbelievable that your count has dropped that much. The IVIG will have worn off as it always does and it doesn't sound as if the steroids are working.

Ann, not as of yet. The nurse practitioner I have been seeing for the last few years isn't going to cut it anymore. Setting myself up with a primary soon. I haven't had a doctor in years been healthy an no insurance until 2 years ago and then I never had anything pressing so just neglected picking someone. But it t is time. Because there is certainly something going on and my hematologist is only concerned with my platelet levels I certainly won't get to the bottom of this if there is one without starting to seek some more help.

I think a neurologist would be the one to see. And yes, your counts could drop that fast.

Well sitting in the transfusion room waiting for an ivig. Came in for CBC after Thursdays lower than expected results. Down to 12. Doctor wouldn't let me leave. He wants to start me on Rituximab tonight than 3 more doses over the next 3 weeks. Very nervous about this I really do not like the idea of the potential side effects. I want to live with 12 I won't carry sharp objects or jump out of any planes promise. Do you think this is drastic? Can't we just bandaid it again for 3 weeks with the ivig which didn't give me any strange reactions? After reading so much I wonder if my doc is over reacting. He claims it is just too dangerous to walk around at 12. He said he would discuss no treatments at 20. I half heartedly agreed and here I sit waiting to be admitted. Fun vacation.

KaraP,
I think your doctor is pretty much in agreement with standards of treatment for ITP, that counts over 20, symptoms permitting, can allow a watch and wait approach while counts under 20 can be more dangerous.

That said, there are some here who choose to watch and wait under 20, and some who have no choice because treatments don't work for them.

It might also make a difference if you have symptoms - if you do have any bleeding I don't think anyone here would advocate watching and waiting at such low counts.

On the other hand, your doctor doesn't get to hold you prisoner. He has to let you leave if you want to.
Erica

I do know that, sorry if I made it sound otherwise. I am just overwhelmed. I expected my levels to be low especially after Thursday's results but I did not expect to be starting another round of treatments let alone staying the night. My doctor did give me a choice of coming back tomorrow, but highly advised against it. Since I am an hour away and already here it seemed prudent to do so. Plus I hate to waste another day of my vacation. The good news is we are going to rapid taper the steroids no need to be on 50 mg or even 10 mg if they don't work for me. Can't wait to sleep again. So tired....just took a Benadryl might be sleeping soon.lol.

Having the tingling get more severe. Face starting to feel like it did on the way to the er originally. No one can figure out what that is all about. Wondering if it's my own personal warning bell that my platelets are dropping. Funny that it seemed to dissipate at the high levels but has been coming back over the last couple of days.

Good Luck Kara!!

Round 3 of Rituximab and another ivig today. At last weeks Rituximab I was at a healthy 90 platelets. Today at 20. So looks like ivig every other week while we wait for the Rituximab to work.

Kara - do you have any signs of bleeding? These are:

Excessive bruising
Petechia
Purpura (pictures of both of these on google)
Blood blisters in mouth
Nose bleeds

And man - I know exactly what it is like to feel like you are being held prisoner because of the numbers! My first year of ITP my doctor hospitalized me every time the counts went lower than 25k. there may come a point in the future that you can "walk around" at 12, but since your diagnosis is new, they will usually err to the side of caution.

But what's perplexing me is the tingly. I don't know about all that. That worries me.

Kittie, No signs except a few petichia nothing like when I first was diagnosed. One mouth sore, same place as last time which is below a broken tooth I need to have extracted which they want me to wait to do. But I wonder about that. Could it be infected and the cause of all this? I just want it out but they say I have to wait. As far as the tingling, a worry for me as well. Really need a pcp but I have no time for an appointment since I have been working 50 hours a week with my only day off being spent in the infusion lab. I am going to try to set an appointment tomorrow . Last day of the rituximab tomorrow as well. This has been one crazy summer that is for sure. I can't wait for a real day off although by the time I have one of those I will have so much other stuff that needs to be done it won't be a dayoff anyway.

Platelets at a whopping 200 today. I am going to go play with knives and have some sharp cheese! :laugh:

Great!!! You really do not need TEST the great counts!!! I received a 1/4" wide by 3/4" long gash on my shin over the weekend. I applied pressure with my hand right away and removed after a few seconds to see the damage. It bled for only a few minutes. Should of had a few stiches but did not. Platelets a week ago was 200+.

Here is an update: August 20th went in for 1 week follow up to my last Rituximab treatment for lab work, a consult with my doctors, and I was scheduled for an IVIG since they assumed I would probably drop like last time. My counts were 127 so the IVIG was cancelled. I was told to come back for Labs only in 2 weeks with a follow up appointment scheduled for 9/20. We were hoping the Rituximab was taking effect.

I felt great for about a week or so. Then I started noticing some minor bruising and a few sporadic pretechia. The 2 week lab work fell on Labor day so that didn't happen, but went in Thursday for the blood work. The secretary called with the results 31. No real surprise there because I was beginning to see more of those yucky spots and feeling a bit fatigued. She said she would forward the info to my doctor. I didn't hear from him. The last 3 days the spots have increased and I just want to crawl into bed after work I am so tired. Pretty sure I have dropped more.

I guess I should call tomorrow morning and request another set of labs, but I really don't want to because what more can I do at this point but have another ivig. But how low is dangerous? It will be 4 weeks tomorrow since the last Rituximab. Is there still a chance that it might work? I am really hoping it does. It seems like I have read here that it can take anywhere up to 8 weeks for it to work. Do I hold off on the ivig and see if the levels come up on their own? I would appreciate any advice anyone may have.

I've heard of rituxan working after that, yes. I have heard of two months for sure.

Your platelets can get as low as you can tolerate them getting, really. Some of us In here go under 10k without treating because we have no real issues w bleeding. That's really the indicator for treatment - visible signs that you are having bleeding issues. Some people get crazy petechia at 50k and have to treat, then there's people like me where I look totally normal at 11k.

So getting to know your own self is kind of the key. Like, for me, I never get petechia in a whole, "oh my god what happened" way. They are really sparse and mostly on my chest, and even with a low cut shirt no one would know any different. But for me, I know when i have those, if I'm also tired and getting bruises easily, it's time to check my numbers and probably treat again.

Unfortunately the standard number for treatment is anything under 30k, but you will notice after reading these posts that lots of us are fine w lower numbers. As for "dangerous"..... That's a hard call. Doctors will say 20-30, some will go lower. My hemo will let me sit in the teens, but I can't do crazy things in that range, like rollerblade or mountain climbing!

When I was first diagnosed, ey threw me in the hospital every time i was under 35k. Now I get a prescription for dexamethisone phoned in if I reall heel like I need it, which has only been once since April. It's all what works for you.

I know it'd be nice if it were more cut-and-dry, right?!?

Hi Dean,
When my platelet count is below 20, my hem doc tells me to go hospital right away. You said you are never hospitalized even when your count was 2. Your hem doc did not urge you to go to hospital with that count? To me I am afraid when my count is in borderline (around 20) because my hem doc can call me hospitalized anytime if the count number is below 20.
Thank you.

Thanks for the response Kittie you have no idea how nice it is to hear other people's stories. It would be great if it was cut and dry its all the unknowns that drive me crazy. I wouldn't even care where my levels were if it weren't for the fact that I would be nervous doing many activities if my counts are only in the teens. Seems too risky to go water skiing or biking at those levels. I have felt fine all the times I have been over 30. So I would be happy to maintain there. Hopefully I will get there at some point.

Thuathien:

All doctors are different and all patients are different. Many people are not hospitalized under 5 unless they have bleeding symptoms, others are hospitalized at much higher counts.